For the past 38 years, the Lupus and Allied Diseases Association, Inc., formerly Lupus Foundation of Mid and Northern New York has been providing education, support, and outreach services for people with lupus and their loved ones, and promoting programs of public awareness, advocacy & research. For the Fiscal Year ending on September 30, 2014 our organization's administrative costs were 6.0% leaving 94.0% of every dollar raised going directly to our Program Services!

It is our hope that if you have lupus or know someone who has lupus you will use this website as a tool to take control and learn to live with lupus. We realize that lupus does not just affect an individual; lupus affects the entire family. We are here for you as you and your loved ones continue on your lupus journey.

News & Events

ADVOCACY IN ACTION

Lupus and
Allied Diseases Association President/CEO and

National Patient Advocate Kathleen
Arntsen gave public

comments on December 7th at the FDA Oncologic Drugs

Advisory
Committee meeting reviewing the application

for the first proposed biosimilar
to NEUPOGEN,

a biologic treatment for neutropenia.

Biologics are
complex large molecule medicines

manufactured from living organisms.
Biosimilars are

follow-on biologics and unlike generic copies of traditional

small molecule drugs, biosimilars will be therapies that are

similar to, but
not the same as, the original product.

Among 18 public speakers, Kathleen expressed a prevailing

viewpoint
among patient stakeholders calling for

expanded clinical trials and post marketing
surveillance to

be conducted to ensure safety, efficacy and tolerability.

The Advisory Committee recommended that the
FDA approve

EP2006, as a lower-cost biosimilar to NEUPOGEN, a biologicdrug

used to help cancer and autoimmune patients fight off infection

while undergoing
chemotherapy. If approved it will be the first

biosimilar drug approved in the U.S.

LADA REPRESENTATIVES ATTEND

ANNUAL LUPUS GALA

Lupus and Allied Diseases Association Representatives

(left to right) David Arntsen, Jacquelyn Mitchell, Kathleen

Arntsen and Stephanie Darwak at the November

24th Life Without Lupus Gala in New York City

David and Kathleen Arntsen with LRI Chairman Robert J. Ravitz

ADVOCATES TRAVEL TO DC

Lupus and Allied Diseases Association President Kathleen

Arntsen (left) with advocates Jacquelyn Mitchell (center)

and Lisabeth Iglesias (right) at the BIO Patient Advocacy Meeting

on October 14-15, 2014 in Washington, DC. The advocates

attended sessions to learn about current research & development

initiatives and health care access to treatment issues.

ANNUAL RESEARCH DONATION

Lupus Research Institute Chairmen Jack Lavery (left) and Robert Ravitz (right) receive our 2014 Annual Research Donation of $20,500 from Lupus and Allied DiseasesAssociation President/CEO Kathleen Arntsen (center left) on October 20th at the LRI Annual Scientific Meeting . Also pictured is Annie Ravitz (center right). We have now donated $270,000 to the LRI in the past 13 years.

Biologic medications are critical for treating many chronic, disabling, and life threatening conditions. However, some health insurance companies are limiting patients’ ability to access these treatments by placing them in “specialty tiers” that require patients to pay up to 50 percent of drug costs rather than a traditional fixed co-payment. This causes patients’ out-of-pocket costs to skyrocket to hundreds or even thousands of dollars per month for a single medication.

Pleaseclick hereto contact your public officials to voice concerns about issues that are important to you and your loved ones. Become part of the solution and be proactive in improving health care. Thank you very much.

The 14th Annual Lupus Charity Golf Classic held on Thursday, August 21, 2014 raised over $74,000 with net proceeds of $57,000, a new record. The tournament was held at the beautiful Shenendoah Golf Course at Turning Stone Casino Resort in Verona, NY. We sincerely thank our golfers, sponsors, supporters, and volunteers for making the event such a tremendous success year after year.

We are honored to be part of the Lupus Research Institute National Coalition and take pride in our collaborative advocacy and research achievements. To read about our successes click here

LFMNNY Visits Capitol Hill with LRI Coalition

LFMNNY President/CEO Kathleen Arntsen and Program Director Sandi Frear attended the LRI National Coalition Annual Advocacy Event March 19 & 20 with advocates from all over the nation. Kathleen provided a passionate account of lupus at the Senate Briefing. Click on the link below to view.

Lupus Foundation of Mid and Northern New York President/CEO and Patient Advocate Kathleen Arntsen recently spoke at a press conference hosted by the Pharmaceutical Research and Manufacturers of America (PhRMA) and New York Health Works to announce the release of the report.“Research In Your Backyard: Developing Cures, Creating Jobs” The most striking finding is that one-third of all clinical trials inthe United States are conducted in New York, making the state a world leader in clinical research.

Here is the presentation given including links to a video with an
overview of clinical trials, as well as a summary of the event and media
coverage. Click on the You Tube link to
the news segment on the local ABC
affiliate WSYR-TV the night of the press conference.

The 6 NYS Lupus Agencies are once again taking a lead on access to care issues that impact our community.

Hi, Take a New York minute and make your voices heard on an important health care issue that impacts our ability to receive the most suitable treatments. Let your NYS Legislators know that Step Therapy/First Fail protocol delays patient access to medications, creates more obstacles for patients and physicians to overcome, denies continuity of care, and FAILS all of us.

If you are Photosensitive or just want to protect yourself from the sunwe just received sun protective clothing donations from Coolibar Sun Protective Clothing. Please contact us at the office 315-829-4272 or by e-mail if interested in finding out more about these products.

Research HighlightsThe latest news in lupus research and drug development Click Here

Lupus Research Institute National Coalition Clinical Trials Website

Online Shopping for Lupus Foundation of Mid and Northern NY

http://www.iGive.com/LupusMidNNYIf you are an online shopper please consider clicking on the above link and a portion of the price of your order will be donated to us. It does not cost you anything extra. We will receive an additional $5 contribution if you register and purchase something at www.iGive.comwithin 45 days of joining. Just make sure you sign up with iGive.com and choose us as your charity. Thank you and Happy Shopping!

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